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Sunday, April 17, 2011

The Faces of Hemophilia



I celebrated my 62nd birthday a few weeks ago. At two years old, I was diagnosed with a rare bleeding disorder, congenital afibrinogenemia or Factor I deficiency. In addition to having blood that does not clot, I have battled attitudinal barriers all of my life.

When I was young, and people were told of my medical disorder, it often triggered a fear response. “Does that mean you will bleed to death, if you cut yourself?” It didn’t take me long to notice that some adults were overly concerned for my safety, while others were simply afraid to be around me.

In the fairy tale story of the Princess and the Pea, the real princess was so sensitive she could feel a single pea on a bedstead piled with twenty feather mattresses on top of it. I always felt I had something in common with her. Not that I claimed to be a real princess, but because the smallest object could leave a painful mark on my body. The little girl in that story, however, lost a good night’s sleep and gained a Prince; I lost being allowed to participate in sports and received odd stares and nosey questions day after day.

“What did you do to get that bruise?” or “Why are you limping today?” people would ask. If I explained that I did not know what caused the injury, the questioner’s faces would show disbelief.  If I had no visible bruises I would hear how cute I was, or how smart. When my disorder was apparent in bruises or limping, the disability was all that most people saw when they looked at me. The other parts of me became invisible.

At eight years old, a doctor told my mother I would not live past ten. At twelve years of age an orthopedic surgeon told me that I did not have a bleeding disorder and he could replace my damaged ankle joints without factor replacement therapy. When I was sixteen a medical technician told me that people with severe bleeding disorders did not live longer than twenty. None of those opinions were true.

Those who fear me have distorted my self-image; medical judgments have threatened to contaminate my view of what I could achieve. Still I have believed in myself. I treasure the benefits of living in the moment. I am proud to be a woman with a bleeding disorder, a retired librarian, a writer of creative non-fiction and coach for other women with bleeding disorders who want to write their own stories.

Most of all however, I long for a day when I, and other people with bleeding disorders, are seen as people first.